I am six weeks post-op. I did not wish to post an update until I felt ready and fact-based. First, thanks to all of you who've had MVD surgery in the past. Your insight was invaluable as I made perhaps the most important decision in my life. As a reminder, I have both GPN (throat area) and geniculate (stabbing pain in ear) neuralgia. HEADLINE: I did not get full relief, but I got some. I have good relief on the GPN nerve and mixed relief on the geniculate nerves. Saw doctor 12/17, and he says I am in the second quartile: some relief with meds controlling it, with hope that I might get in the third quartile, which would be significantly more good days. I track my pain levels, and right now the good days (level 3 or less with some OTC meds) are at 52%. They were are 28% prior to surgery. Please track your pain levels (I do it the next morning) on a calendar to help you make reasoned decisions.
As it turns out, the doctor found compression on cranial nerves 7&8 (geniculate) as well as 9 (glossopharyngeal.) I believe he described the blood vessels as being twisted around these nerves. He insert the teflon sponge/fibers between the vessels and nerves. Here's a summary of these six weeks:
Week 1: ICU two days; regular room 2 days; surgical pain controlled by Percoset. One bout of nausea. All in all not too bad. At home by end of Day 4. Got off Percoset in the daytime by day 6. My right ear (surgical side) is full of fluid; hearing is very muffled. This is a problem as I have a 40 percent hearing loss on the left; but we make do. (Set TV to close caption so you don't blow everyone out of the room.) Husband is an excellent caretaker, even though he got home and cleaned out a drawer and threw away the expensive Frankincense and other aromatherapy oils my mother bought me. Thanks to whoever suggested getting a white board. We used it to track my pain meds. You are so foggy that you forget what you took and when you too it. Also, take the stool softeners. You'll be glad you did.
Week 2: Off all Percoset by day 10. GPN pain has reduced. Throat pain is very low and previous swallowing problems have diminished. Praise God. Old geniculate (ear) pain is back at a level 8. On two days, have pain from a lumbar puncture (bottom of back), which was put in to alleviate cranial fluid pressure. Call the PA, and she says it's OK to take Aleve, which relieves the pain.
Week 3: I am very fortunate to have a close group of Bible study friends. So that my husband could go back to work, they signed up on a schedule to stop by at 11 a.m. each day (most are retired and/or self-employed). They checked on me, brought soup and muffins and were at hand if I took a shower or needed a trip to the pharmacy. If you are thinking of this surgery, please set up some assistance in your home from trusted friends or family members. Lean on them and let them help you. Ear pain was up and down during this week.
Week 4: I have 3 days in a row with low pain (3 or less); so on Day 28, I decide to do stupid stuff like lift heavy things, wash a heavy denim coverlet that weighs the equivalent of 10 pairs of jeans when wet. Don't do this. My neck muscles and a gland below my ear swell, which cause severe pain in the surgical site and the ear. Around the clock pain for 2 days.
Week 5: Smarter, and I slow down and pain eases somewhat. Go to my ENT for a look at the ear as I still don't have hearing back. Eustachian tube is completely blocked. Audiology shows that hearing loss externally is significantly different from ear canal, indicating most of the hearing loss should be temporary. ENT suggests a wait-and-see as he thinks the ear canal may open up slowly on its own. On four of the seven days pain is controlled with Tylenol (reminder: Watch your dosages...I only take one extra strength every five hours and alternate with Aleve at night. I also take Tramadol if needed.) Also, I am taking acupuncture 1-2 days a week, which opens up the Eustachian tube a bit and helps pain.
Week 6: We saw the doctor yesterday. Neither the surgeon nor I think this was a home run, but I do think he was a very skilled and precise physician. We remain hopeful that the pain will reduce as the ear fluid and surgical swelling subsides, but the odds of full relief are low. I continue to watch and wait and pray. I am feeling a bit stronger each day, but still need two-hour naps like a kindergartner. I hope to go back to work at least part-time in a few weeks, but it will be difficult if the ear pain is at high levels and/or if the ear fluid doesn't subside.
I do not regret making the decision to do the surgery as the pain levels were so high and frequent that I had almost no other option. I do not know what I will do if these levels return, but I continue to rely on strong faith, good friends (which includes this incredible support group) and an awesome family.
God bless you all every day, but especially during this season. I could not have gone through this without your reasoned advice and sustained good wishes.